MARCH 2010 Rads Group

MariannaLaFrance

Hi ladies,

So, I am starting my rads today at 3:30. I went for my simulation and Sharpie mark up last Wednesday. I seem to have lost my marks, as I woke up last night sweating in my cleavage area.... that is the only area where I was sweating...Does this qualify for a night sweat?  I was never even aware of night sweats until I got into this nightmare.

Anyway, my simulation went fine, after my rad oncologist got pretty hot under the collar with me because I expressed concern over not getting tattoos. He says that the hospital follows "Sharpie" as a protocol, so I should accept it. I told him I sweat a lot and am an avid exerciser, and he told me that THIS IS MY HEALTH AND MY HEART WE ARE TALKING ABOUT. YOU BETTER MAKE SURE YOU KEEP THESE MARKS ON YOUR BODY. (simulating his voice here). He also suggested I switch to walking indoors until the treatment is over, as we're heading into hot weather here.

OK..... a little bit of overreaction on his part. Wasn't questioning the treatment, just wanted to ask about the tats.

I'll write an update later to let you know how it went!

June2268

Good luck to you MariannaHB, let us know how it goes!  I am so tired of being tired......I swear I cannot take the unknown and I have not been sleeping at all 3-4 hours a night.....does it get better as I never used to be like this.....The constant worry about the unknown and possible side effects etc....I know everyone is different, what might bother one may not be a problem at all for others......So I know I feel lucky to have all you women here to chat with I just never know how I am going to react....I am thinking of getting some Tylenol pm, will this help......I do have zanax but I feel like I sometimes get insomnia from that......I do daycare out of the home here and I cannot even keep my eyes open today.....I start my dry run on Wed and actual 1st treatment on Thursday, can this week hurry up by....ARGH!!!!! I am just so frustrated  Thanks for letting me vent!!!!!

Sugar77

Hi, regarding my inquiry in and earlier post about what vitamins and antixoidants to avoid during chemo, I found this write-up here on bc.org. Here's a link (you might have to cut/paste into your browser):

http://www.breastcancer.org/treatment/radiation/ext_expect/vitamins.jsp

Sherri 

MariannaLaFrance

Hi June

Totally relate to the anxiety. I am sorry you're so tired today. I haven't had any prescriptions written for anti-anxiety meds, but I've been trying some relaxation techniques to keep my mind in check. I have started meditating and praying daily, and I am trying to do yoga as well to keep my focus on the end goal-- i.e. how to beat the cancer. If I spend too much time focusing on the diagnosis itself, I get freaked out and start panicking about my children, my family, my quality of life, and sadly enough, death.

Morose, eh?

Well, I think it's natural to an extent. I am trying to control my thoughts so I can get the rest I need, and for peace of mind.  I am keeping as busy as possible to avoid thinking about it all. Hard to do!

Good luck with your rads.... I 'll post later on how my first treatment goes today. I am anticipating a stern talk from my doctor since I "sweated" off my marks. I need to go buy my aloe vera gel for my breast as well. I have been out on a buying mission, trying to find paraben, pthalate free cosmetics and creams. Let me tell you... expensive and haven't had a lot of luck yet! I just checked out how terrible sunscreens are for estrogen disruption, and now need a sunscreen that doesn't have any of that nasty stuff in it.

Any tips / product recommendations are welcome! Have a good Monday, ladies.

Peace,

MaryAnn

cabmom

June, I'm so sorry that you're not resting.  I was like that almost all the way through chemo but for some reason I"m much calmer now than I was....don't have any idea why other than I'm leaving all this in a much higher powers hands and always praying for the best.  Can't say that I don't still worry about what if but I was letting that get in the way of what was more important in my life and felt that cancer was winning regardless of how this turns out for me.  I didn't want to allow it to take away any more time from me than was required for treatments and such.....so I'm focusing on family, friends and my faith and that seems to have helped me a great deal.  I'm not saying that you don't have faith or anything like that but I certainly was questioning mine and I knew that I was wrong in doing that.  Sending positive thoughts your way for Wednesday and Thursday.  So far mine are going ok just a little tenderness but still not sure why.  I meet with the onc tomorrow.

MaryAnn, I'm still shocked that they are relying on the SHARPIE instead of tattoos....I don't blame you for asking......I guess they all have their own ways of doing things.  My onc did give me the choice of having the tattoos or relying on the sharpie but said that it was easier with the tattoos so I went ahead with it.  Good luck......how many do you have to have? 

Hope everyone else is doing well....for me I've finished #4 with #26 to go..... 

Mommaof2

I went in for my simulation/CT today and am so relieved to have that behind me.  It was a really easy appt. and only took about an hour.  I got three tattoos (didn't hurt at all) and marked up with the sharpie.  I found out that since it is my left side being treated I will have to hold my breath during the actual treatment, it shouldn't be a problem though as my tech had me hold my breath longer  than I will for the actual treatment.  Did anyone else have a mold of their upper body made for positioning?  I don't think I have read of any others having that done.  I was also very relieved to get an appt.time that works out perfectly for me. I'll have my first treatment on March 29th for a total of six weeks.  I am so looking forward to getting my treatments over with and getting back to a somewhat "normal" life.

I hope everyone that has started treatments are doing well and hope everyone has a great day!

MaryNY

Hi Mommaof2: I also had a mold of my upper body made for positioning. It's my left side being treated too, but I've never been asked to hold my breath during treatment. I'm in the prone position (face down) so maybe the breast doesn't move so much when breathing. You will find the actual treatments so much easier and quicker than the simulation/CT.

fan2544

Hi all and especially to Sugar77~ a fellow Ontarian. I am in Windsor ON. Finishing off  25X RADS have 6 left. Doing Ok. Some pain and burning and now a lot of fatigue. Making it through though so good luck to all you ladies. Will be thinking of you.

kathylev

Well I gained 8 pounds doing chemo and since I have to have radiation anyway, would be thrilled to lose weight during treatment.  I had my mapping session today and will start treatment on monday.  Are you ladies getting treatment while lying on your backs or bellies?  The rad oncologist scanned me in both positions and decided to do mine on my stomach to avoid scarring of the lung. 

Kathy

MariannaLaFrance

Just got back from my first session. Some sharp pains on that side of my torso now, hoping those are normal. Otherwise, no other sensations. I bought my aloe vera gel and got my blood drawn per my OB-Gyn to test for Vit B and Vit D deficiencies, as well as a normal blood panel. Was anyone else shocked at how long it took to ever take a blood panel? I got mine done 15 mins before I was wheeled into surgery, and that's the only time anyone's bothered to take blood. I called my OB, and she put in an order to do a quick check on my panels and vitamins, thanfully.

The medical process is so advanced yet so backward at the same time....

Klawless9

mommaof2-

 i have simulation tomorrow at sloan kettering in rockville centre, NY. I hope my appt goes as smoothly as yours because i'm not looking forward to it at all..

I'm not looking forward to getting the tat's but it is what it is...i figure, maybe if i go in there and tell the folks "look, i gotta get this off my chest in order for this appt to go smoothly....i don't wanna be here, i want all medical professionals to leave me the F alone, and if your radiation messes up my new boobie....i'm kicking everybody's ass in Sloan Kettering!".....maybe i'll say that after "hello"....LOL hahahahahahaha  

 Kendall 

Sugar77

fan2544 - welcome to the March rads group.  You'll get lots of info and support here from all these great ladies. Although I now live in Mississauga, my hometown in Sarnia...not too far from Windsor. 

Sherri 

Mommaof2

MaryNY -  I wish my treatment was done lying on my stomach - I would feel much more confident about my heart not being hit.  So many worries about heart/lung damage, but trying not to dwell on that.  Thanks for the encouragement about the appts. can't wait to get started so I can be finished.

Kendall - you are so funny!  Don't worry about the tattoos - it doesn't hurt at all. They are so tiny, I don't know if I can even find them.  I hope your simulation goes well tomorrow.  I had been dreading my appt. for weeks and it was so easy, nothing to worry about at all..  The only thing that was even slightly uncomfortable was having to lie with my arms over my head for so long.  Good luck and let us know how your appt. goes tomorrow.

Liz

c2will

Finished 11 of 21 today - I'm over the hump!  I'm getting the suntan look on my chest, and have tenderness by the scar.  So far, not too bad.  I have my boost simulation tomorrow, so I'm expecting a new set of marks, with more clear adhesive.

Good luck to the ladies just beginning - the time will pass befoer you know it.

charmainejensenvoisine

Hello Everyone,

A few familiar faces in here

I finished 4 courses of chemo therapy February 2nd and I started 'radiation therapy' on March 2nd and as of today March 15th I went in for my 10th of 21 treatments of 'radiation therapy'.   Yes I have started burning in area from breasts to underarm - particularly in the area towards the underarm quite a bit.   Today when I saw the Radio Oncologist (every Monday is review as well as RADS), he gave me a prescription for ' Hydrocortisone Cream' (which is a cream highly recommended for RADS). 

The area closest to underarm too is swelled up ( I had 2 lymph nodes removed), I believe the swelling is from repetitive motion (constantly raising my arm above my head for the RADS).

Hope all others are doing well with their RADS.    Charmaine

MaryNY

No burning yet for me - today was #14 (of 33) but I'm suffereing from very bad arm pain. Rad techs suggested it was from holding my arms over my head during treatment, but since that only last a couple of minutes a day, I don't know. The pain/achiness started two days into treatment and hasn't even eased off over the weekends. It seems to be getting worse rather than better. At least it's on both sides so that means that it's not likely to be lymphodema as I had the BC in my left breast and had lumpectomy and SNB on that side only.

joanneasiata

HI ALL

Ive just been catching up on every one  and Ive been thinking about what position i will be on when I'm getting zapped i was lined up and tattooed on my back so does that mean i will be on ,my back when getting zapped ????

thanks JOJO

MaryNY

JOJO: if the tattoos are on your back, I would think that means you will be in the prone position (face down).

CTMOM1234

Hello, this is my 1st post but I've appreciated all of your posts, so thought I'd share as I, too, am having radiation. Background: Routine and 1st mammogram at the age of 43 last October detected a lump (hadn't even known there was a lump there, just went for routine mammogram in the mobile van because it was convenient and figured it was a good idea). Called back to have an ultrasound which resulted in benign/fibroadenoma diagnosis and overall reporting that I have dense breast tissue, and then two subsequent 6-month ultrasounds showed no change, just leave it be was the recommendation; older sister and mom never had even one irregular mammogram, so naively thought I was over the worrying. Then got surprised at the next annual mammogram (my 2nd) at the age of 44 showed micro-calcs in the same left breast, but different quadrant than fibroadenoma. Did some research and found that fibroadeonoma often is a precursor to breast cancer diagnosis. That led me to agonizing waiting that unfortunately we must go through to get tests/information: stereo biopsy in left breast which confirmed DCIS in Dec., genetic testing (BRCA1& 2 negative) in Dec., more mammograms, then Dec. MRI of both breasts which then led to a Jan. wire biopsy in right (benign), left breast lumpectomy GA surgery in Jan. (aka as "partial mastectomy" by my surgeon because it was sizable amount of DCIS), and then another Jan. GA surgery to check sentinel nodes after 1.7 mm of invasive was found in pathology of lumpectomy (0/3). Met with oncologist in Feb. who gave me option to begin  tamoxifen later but no chemo. (believe her cut-off was < 1 cm), and I am still considering whether or not do so after rads are over. 

Today was my 6th rad. of 33 treatments (25 + 8 boost) to my left breast in the prone position. I have just marker marks and am dealing with all of the same issues to keep those marks and stickers on me, but I do appreciate having the option to not tattoo which is my preference.  Can't complain, no redness or pain, just minor breast fullness, same as when recovering from lumpectomy. They gave me a lotion to use 3 times per day and I put it on in the dressing room right after I'm blasted, then midday, and before bedtime (can't put on within 4 hours of treatment, but I go in the morning). Everything running pretty quickly -- takes < 5 minutes to line up the red laser beams, I watch them adjust the planned and actual numbers on the monitor, I count to between 17 and 22 on each side and I'm done.

Best of luck to everyone. CTMom

CTMOM1234

I agree with MaryNY. I have 3 marks on my back -- one in the center and the other two closer to my breasts -- and I lie face down.

fan2544

Thanks Sherri.

It has been interesting times here in Windsor if you follow the news. A lot of conversation In the "waiting areas." Hopefully answers will be forthcoming.

 Done for today ( I do the early am treatment times @ 7 am usually)  On my lunch now but I will keep checking to see how everyone else is doing as they go through this process. Had a checkup too today and the burning is significant but cream helping as long as I dont wear a "real " bra.  God speed you all along.

Sugar77

fan - I can only imagine.  My mother has known Dr. Heartwell's mother for years as they are from Sarnia. Was she your surgeon?   

Klawless9

I survived simulation today. I'm on my back and getting the right chest area done. i forget how many times i was pricked for the tattoo's...i think it was about 6.

the ladies doing it were really nice and showed me the room i'll be getting the radiation in.

i LOVED the warmth of the mold...and luckily it wasn't until it was almost over that i started feeling pins and needles in my fingers and arm from holding it up over my head.

i came to the conclusion that it is the actual memorial sloan kettering building that gives me anxiety. As soon as i pulled up, i started breathing heavier, stomach felt queasy and tears rolled down. walking in was like walking the plank.

maybe once i'm going everyday, that will lessen. I start radiation 3/31 for 5 1/2 weeks. 

Kendall 

June2268

Well said Kendall, it does feel like walking the plank!!!  I too feel that way when I enter the cancer building I attend......WHY ME?  Hard not to.....I also have 6 tattoos as well, but no mold and I go for my dry run tomorrow, we will see how that goes....I think for me the hardest part was waiting to start as I seem to get anxiety for not knowing what to expect......I feel bad that you have to wait until the 31st.....that is a long wait, I hope it flies by and try to relax from now until then.....June

fan2544

HI again Sherri.

No she was not my surgeon but have had a few conversations with those who did. Very sad & scary  for sure for those women who were involved in the wrong diagnosis cases . Hard to imagine. Hope you are doing well and thanks for the responses.

lolo720

Hi Everyone,

I started my rads on 3/3.  Today was #10 of 34 -( 28 regular and 6 boosts).  Thankfully so far, no real redness or burning.  I saw the nurse today and she said usually after #10 is when things can start happening.  I was given a Rx for betamethasone but haven't had to use it yet.

I have 8 tatoos.  They are so tiny, I can barely see some of them.  I'm on my back for my right breast.  They "zap" me 3 times.  Once from above, and each side.  I did not have a mold done. 

It is tough emotionally to do this every day.  Can't wait until it's over. 

Prayers & good thoughts to you all.

  

MariannaLaFrance

I totally agree, Lolo. I am having a hard time with this. I never expected that. After my surgery, I mentally figured the rest would be downhill and not too bad.... UNTIL it hits me square in the face every single day that I have to go to the hospital for radiation. I asked the techs today if it's normal to feel tired after only 1 treatment...... I guess I am feeling tired today, but also anticipating the fatigue.

 We'll just have to power through this portion of treatment. I meet with my oncologist for the first time ever tomorrow a.m. so..... yet another doc appointment.

c2will

I completed #12 today - only 9 remaining (4 regular, 5 boosts).  Wow - I'm down to single digits!  I had my simulation for my boosts today.  It was a little tricky for them to position me, since the scar is very close to my underarm, so I will be propped up a little in order to have a good angle.  So, more drawingnon my boob - this time a rectagular box, covered by more adhesive.  Lovely.

I went shopping for a dress to wear to a wedding in three weeks.  It was bad enough that I'm carrying my extra 'diagnosis/comfort food' pounds, but my scar was visible in a couple of the sleeveless dresses that I tried on.  Next year this time the scar will probably be soft and faded where I won't care.  Now, it feels much too conspicuous.   

I also had an appointment with my BS.  I'll have my next mammogram in six months, so that's one doctor that I don't need to see for awhile.  Signs of a normal schedule/life returning...

charmainejensenvoisine

Hello Fan2544,

I see that you too are getting some burns, so what creme has the radiation team got you using.   My burn from RADS is really dark and some swelling/inflammation in the underarm area now so the Radio Oncologist prescribed me hydrocortisone (which apparently is the norm for RADS).    You say that you are not able to wear a 'real' bra.  I have even tried wearing a very, very losely fitting sports bra and it too is uncomfortable, gonna have to go buy me a undershirt....  so that you into wearing now too ...

Good luck with the rest of your treatments, I seem to get redder ( more burned with each treatment).  My last treatment is the last Tuesday of this month, so cannot wait.  Charmaine

CTMOM1234

Lolo, Congrats of #10 and I'd heard the same warnings about how things start to get a bit "toastier" after that, but guess time will tell for us all. I'm right behind you, #8 tomorrow -- then I'll be about 1/4 done (25+8 in tot) .